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What's the difference between plagiocephaly and craniosynostosis?

Plagiocephaly is the flattening of a baby’s head, either on one side or the back of the head. Plagiocephaly can develop in utero or, more commonly, from lying in the same position for too long (positional plagiocephaly). It is not life threatening and has not been shown to affect brain development.

Craniosynostosis is a serious birth defect where the joints between a baby’s skull close prematurely, before the brain is fully formed. It can affect brain development and treatment usually involves surgery.

What is torticollis? Do all plagio-babies have torticollis?

Torticollis (also called “wry neck”, literally “twisted neck”) is a condition where a baby’s head is tilted to one side. The baby may also have difficulty turning his or her head.

Not all babies with plagiocephaly also have torticollis – but it’s not uncommon to see the two together. Plagio-babies may favor one side of their head, which shortens or tightens the sternocleidomastoid (SCM) muscle, limits their range of motion and causes the head to turn or tilt to one side.

Torticollis can also be caused by placement in utero, lack of space in utero (often present with large baby, small mother, or multiples) or trauma during the birth process.

How can I tell if my baby has plagiocephaly?

A visual screening will alert you to whether your baby has plagiocephaly. Usually the flattening becomes noticeable by about 6-8 weeks of age.

Signs to look for include a flattened appearance on the back of the baby’s head (brachycephaly) or on the sides, resulting in an elongated appearance (scaphocephaly). Other signs include:

the baby’s forehead may be more prominent on one side

one ear may be pushed more forward than the other

one eye may appear larger than the other

one cheek may appear fuller than the other

the baby’s nose may appear pushed to one side

the baby’s head may be tilted to one side or the baby has difficulty turning his/her head (possibly resulting from torticollis).

Generally your child’s pediatrician can diagnose plagiocephaly by a thorough examination, without an x-ray or CT scan.

Is plagiocephaly painful?

Plagiocephaly is not painful, nor is the treatment of it. It is most “painful” on the parents, emotionally speaking. Fortunately, if it is addressed early, the child will have no memory of the experience.

Will plagiocephaly affect my child's development?

Plagiocephaly has no known effect on a child’s brain development. It does affect the shape of the head as the skull forms, and if accompanied by torticollis can affect the child’s ability to move properly. But with prompt treatment, these issues can be resolved rather quickly.

Some research indicates possible vision and jaw alignment issues with untreated plagiocephaly, but for the most part it is widely accepted to be cosmetic in nature.

Is treatment required, or can my baby's head round out on its own?

Very mild cases of plagiocephaly may resolve on their own, but for moderate to severe cases, treatment is recommended.

Treatments include repositioning and physical therapy exercises, and for more advanced cases, helmet therapy may be advised.

In any event, as soon as you notice that your baby’s head may be misshapen, contact your child’s pediatrician for an examination and proper diagnosis.

What could happen to my baby if her plagiocephaly is left untreated?

If left untreated, your baby’s condition may worsen, and by the time her skull is fully formed and sealed, it will be too late to correct the flattened appearance.

There is some evidence that vision and jaw alignment issues could result from a misshapen head. But even if the long-term effects are purely cosmetic, consider the effect on the child’s self-esteem. Many adults with untreated plagiocephaly have reported on the suffering they endured because of their deformed head shape.

What is repositioning?

Repositioning is a technique aimed at keeping your baby’s head off the flat spot and on the areas of your baby’s head that “stick out.”

Rolled towels, special pillows and sleep positioners may be recommended by your child’s physician to elevate the flattened side away from external forces that contribute to flattening such as the floor, crib mattress, car seat, baby swing, etc.

Ask your doctor for a timeline of when to seek other treatments such as helmet therapy. Repositioning does not always work, especially if the baby is a bit older and treatment was delayed, or the plagiocephaly is severe enough to warrant a more “aggressive” treatment.

(Note: Though we used the term “aggressive,” helmet therapy is not invasive or painful in any way. It is extremely gentle and causes no pain or discomfort to the child).

How long will helmet therapy take?

It depends. Helmet therapy can range anywhere from a few months to a year or more.

The general rule is, the sooner the plagiocephaly is diagnosed and treated, the faster correction will result. The younger the child, the more malleable their skull is and therefore receptive to re-formation.

How much does treatment cost? Will insurance cover it?

Costs of helmet therapy depend upon several factors including how much treatment your baby needs, where your baby receives treatment, and what “brand” of helmet you choose. Helmets are generally priced at around $3,000-4,000. [in the USA]

☞ Note Jaymee Stocks' comments are mainly about insurers in the United States. “Insurance companies can be very stubborn. Call and ask your provider if this is something they cover. If they give you a flat-out “no,” ask them to check under ‘durable medical equipment.’ If they still say no, prepare yourself for a fight. It may take some time, and you might consider starting treatment before approval, if you have an older child. On your part, it may take several appeals and hours of research, but these fights have been won over and over in the past.” If your insurance company does not cover the cost of your child’s helmet, apply for a grant from The Halo Project!

☞ Helmet therapy in Alberta is not covered by Alberta Health. Check with your private or corporate health insurance provider about coverage.

What type of doctor should we see?

Your baby’s pediatrician should be able to diagnose him or her with a thorough examination. After a diagnosis of plagiocephaly, the doctor may refer you to a specialist such as a neurosurgeon, neurologist, or craniofacial plastic surgeon.

Look for a specialist who has experience with infants.

My baby's a year old. Is it too late to seek treatment?

It is probably not too late, although your baby’s skull growth has definitely slowed down by now.

Some helmet manufacturers will “band” babies up to 24 months old; however, treatment within the first year is found to be most effective.

The earlier the diagnosis and treatment, the better your chances of success!

My baby's helmet has an odor. What can I do?

It is normal for your baby’s head to perspire, especially during the first few weeks as they adjust to wearing the helmet.

Take off the helmet only during the prescribed time, and wash your baby’s head using shampoo. Then clean the helmet using whatever cleaning agent the manufacturer recommends. Then, if possible, place the helmet in direct sunlight for the remainder of the “off time.” This helps to reduce odor and reduce any yellowing appearance.

How do I handle people staring at my baby in public?

People will stare because they are curious. If you’re up for it, take advantage of the opportunity to spread awareness about plagiocephaly. Either way, keep a smile on your face and either ignore the stares or answer questions respectfully.

Helmets can be decorated to virtually anything you can imagine to either answer the question (some say “fixin’ my melon” – watermelon theme; or “fixin’ my flat” – car theme) or make the helmet appear less medical.

After helmet therapy, could my baby's plagiocephaly return?

There is less than a 1% chance that a child’s head will revert back to its pre-treatment shape. By the time treatment is completed, the baby’s skull bones have typically hardened and fused together, greatly reducing the chance of regression.